In a recently released study in Pediatrics (10.1542/peds.2017-2719), Dr. Sudhir Sriram and colleagues examined the question of whether extremely premature infants who developed bronchopulmonary dysplasia (BPD) have different neurocognitive and behavioral outcomes at age 10 years than their peers who did not have BPD. The authors defined BPD to best align with recent consensus definitions, recognizing that study infants were born prior to more physiologic definitions: thus moderate BPD included infants with oxygen dependence at 36 weeks post menstrual age (PMA) and severe BPD included those with both oxygen dependence at 36 weeks PMA and ventilator assistance. BPD is a well-known pulmonary complication of prematurity whose precise cause remains elusive. The great number of co-occurring and potentially contributing factors, such as extreme immaturity, systemic inflammation, sepsis and acid/base derangements, have complicated neurodevelopmental follow up study of survivors.
The authors studied 882 participants of the ELGAN (Extremely Low Gestational Age Newborns) study who survived to age 10 years and returned for follow up neurocognitive testing – this was an impressive 92% of eligible former very premature infants. These now school age children underwent a well described and comprehensive battery of tests including intelligence testing, academic achievement testing, quality of life surveys and autism screening and assessment. The “multitude of dysfunctions” identified among those with BPD, as compared to those without, is relatively overwhelming, particularly since the authors adjusted for confounders and carefully qualify their findings. They even found a “dose response,” in which severe BPD had a greater impact than moderate BPD on most aspects of neurodevelopment.
So should neonatologists and pediatricians rush to inform parents about this dire new information? When we are able to hear directly from parents, it does not appear that additional prognostic statistics are necessarily what parents are seeking. In a recent Family Partnership article in Pediatrics, the parent of Gabriel, a very premature infant, asked that instead of facts and figures about future disabilities, the discussion begin, “Your child will be welcome in our nursery.”1 This important affirmation of personhood for the fetus/newborn sets the tone for a discussion that can be guided by the parents’ values, beliefs and hopes. Dr. John Lantos, editor of the Ethics section for Pediatrics, has spoken eloquently about the critical need to recognize the premature infant as a human being and a person, and about the limitations associated with directive counselling that focuses primarily on medical facts and figures.2,3 We might instead take our lead from Dr. Hugo Lagercrantz, quoted by Dr. Sudhir Sriram et al, who suggests that “…more skin-to-skin care…and talking and singing…” could be the key to overcoming negative socio-behavioral outcomes in childhood for former extremely premature infants.4 In fact, good preliminary evidence suggests that even ventilated infants are stable in skin-to-skin (“kangaroo mother”) care, and this message may positively support both parents and infants.5,6 Dr. Sriram et al have given us a great deal of “food for thought” that can serve us well in our care of school age former premature infants who did and did not have BPD – we must use the knowledge wisely.
References
1. Rutherford E, Rutherford M, Hudak M. Parent-Physician Partnership at the Edge of Viability Pediatr 2017; 139 (4) e20163899.
2. Janvier A, Lorenz JM, Lantos JD. Antenatal counselling for parents facing an extremely preterm birth: limitations of the medical evidence. Acta Paediatr. 2012;101(8):800–804pmid:22497312.
3. Garrett JR, Carter BS, Lantos JD. What We Do When We Resuscitate Extremely Preterm Infants. Am J Bioeth. 2017 Aug;17(8):1-3.
4. Lagercrantz H. Are extremely preterm born children with autism the victims of too much isolation in the incubator? Acta Paediatr. 2017; 106(8):1246-1247.
5. Lorenz L, Dawson JA, Jones H, Jacobs SE, Cheong JL, Donath SM, Davis PG, Kamlin COF. Skin-to-skin care in preterm infants receiving respiratory support does not lead to physiological instability. Arch Dis Child Fetal Neonatal Ed. 2017 Jul;102(4):F339-F344.
6. Azevedo VM, Xavier CC, Gontijo Fde O. Safety of Kangaroo Mother Care in intubated neonates under 1500 g. J Trop Pediatr. 2012 Feb;58(1):38-42.